This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.

A good article - Be sure to look at the video "I'm Mad as Hell" The commentator is expressing some of the feelings we have seen posted not only on TIMS but on blogs and other Internet sites. I hope we can surround people's anger with positive energy as we move forward.

There are precious few Einsteins among us. Most brilliance arises from ordinary people working together in extraordinary ways. - Roger von Oech

Advertisement

Thanks for posting this Sharon. It is well written, easy to understand and describes the frustrations everyone who who believes in CCSVI are feeling.

Even more important than finding doctors to diagnose and treat CCSVI, our immediate challenge is to get the mainstream press to pay attention. Hopefully the Buffalo PR department will be able to turn the right heads, and the floodgates will open.

If Buffalo is not successful in getting out their story, we are going to have to take drastic measures to get noticed. Let's hope we don't have to yell out our windows, because our neurologists will chalk it up to those crazy people with MS.

Best,
I really don't agree about publicity. By getting to doctors that are willing to treat us it will snowball. Doctors are so competitive, when one doctor starts doing it and others hear, it will cascade. I really think the most important thing is for every body to try and get doctors in their area to try treating.
I know that happened in one city already!

I have tried to read articles that highlight the vascular issues in MS but the following was pretty new to me:

The concept that MS is primarily a vascular disease can be traced back to 1863 when a researcher named Eduard Rindfleisch proposed that “the primary cause of MS is an alteration of individual blood vessels”. He based this interpretation on his consistent observations that a vein was present in the centre of each lesion.

As I can tear Ashton Embry's article apart after my first read through, anyone who has an overview of MS and basics of CCSVI will be able to destroy it. I am a subscriber to New Pathways but this is a misleading and inaccurate article. Such articles make it harder to convince doctors to take CCSVI seriously.

Theresa, here goes:
AE says: undoubtedly marks the start of a new era in understanding and treating MS.
MW - far too early to say this, so AE misleading.
AE says: a major research project which will be done at the University of Buffalo over the next few years
MW - the research to confirm prof Zamboni's correlation is underway and may report in Spring 2010, so AE inaccurate.

AE says: What need to be answered in this regard are questions such as “Does CCSVI play a major role in the MS disease process?” and “Does CCSVI come before or after the onset of CNS autoimmunity?” To me I think we can answer the first question with, “Given the current data it is almost a certainty that CCSVI is a key part of the MS story”.

MW - Wrong questions and nothing is certain at this stage.
Good questions are:
is the Zamboni correlation confirmed in a larger study ?
does venous ballooning reverse CCSVI for 6 months in many pwMS ?

MarkW wrote:Theresa, here goes:AE says: undoubtedly marks the start of a new era in understanding and treating MS. MW - far too early to say this, so AE misleading.AE says: a major research project which will be done at the University of Buffalo over the next few yearsMW - the research to confirm prof Zamboni's correlation is underway and may report in Spring 2010, so AE inaccurate.

AE says: What need to be answered in this regard are questions such as “Does CCSVI play a major role in the MS disease process?” and “Does CCSVI come before or after the onset of CNS autoimmunity?” To me I think we can answer the first question with, “Given the current data it is almost a certainty that CCSVI is a key part of the MS story”.

MW - Wrong questions and nothing is certain at this stage. Good questions are:is the Zamboni correlation confirmed in a larger study ?does venous ballooning reverse CCSVI for 6 months in many pwMS ?

Sorry I have more interesting things to do. My job is just making people think about facts and speculation...................

I agree with Mark that this is a really poor, counter-productive article. I encourage people not to use this in your efforts to convince your neurologists, because it's too hysterical and riddled with errors and opinions. Use something fact-based, like the excellent Zamboni papers.

One of the statements that bugged me was this:

Ashton wrote:This is doubtful given that adequate vitamin D can prevent MS...

Since when is this a given? It's not. It's logically invalid to use speculation to support your assertions.

I also found it amusing that he first states that "MS research community has exhibited a similar, highly skeptical reaction to CCSVI and I expect they will not even consider incorporating CCSVI into their research plans," and then after that describes research into CCSVI such as the Buffalo study, and makes no mention of the NMSS CCSVI funding push or the imminent clinical trials at Stanford.

The fact is, the research community is showing interest in CCSVI, and we can expect this interest to snowball if the early studies show positive results. That's how science works.

Just a reminder folks - Ashton Embry was the person responsible for getting W5-TV to do the documentary on CCSVI. We all know how the story has exploded since the documentary was released. He is supporting the research and the study of CCSVI.
As far as the Vitamin D comment -- A. Embry has been one of the outspoken advocates for the use of vitamin D not only for MS but for other diseases. It has only been in the past two years that the medical community has finally started testing for vitamin D levels - again, Embry was ahead of the group. And, I do not have the link right now, but in fact there is a study of a group of nurses who took vitamin D - their risk of getting MS was lessened.

Mark and ScutFarkus - you are correct - this is not an article to take to your neurologist. It was not written to be a fact, data oriented article about CCSVI and its relation to MS. People need to use the research papers from Zamboni or Haacke, or, as I have suggested, the article written by Dr. Jack Burks for the MSAA is a good one.

The Embry article was addressing the lack of attention by the media and the medical community --- not what CCSVI is about.

There is plenty of evidence for pwMS taking Vit D3. If you are thinking of getting pregnant and have MS in your family then taking D3 is a cheap and sensible option. If you want to read up on Vit D3 and MS then search for papers by George C Ebers. He is a Canadian but a professor at Oxford University and is usually on the author list of papers on this subject.

There is little evidence on the correct dose of vit D3 for pwMS. Personally I take 7200 iu per day, cos its easy and cheap and it unlikely to cause problems for me. You should check with your doctor before taking high dose vit D3 in case it may be conta-indicated for you.

Ashton Embry is a geologist with a PhD. For me scientists, like AE, should not write misleading or inaccurate articles in magazines like New Pathways. NP is taken as gospel by many pwMS.

Who is online

This site does not offer, or claim to offer, medical, legal, or professional advice.
All treatment decisions should always be made with the full knowledge of your physicians.
This is MS does not create, endorse, or republish any content.
All postings are the responsibility of the poster. All logos and trademarks in this site are property of their respective owners. All users must respect our rules for intellectual property rights.